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Tyrosinemia Pal

The Tyrosinemia Pal was developed to help families in the management of tyrosinemia.

It is divided into sections to help keep papers, appointments, and other information organized. Each section begins with a short introduction that describes its purpose and suggests information that could be added. Many families find it helpful to take their Tyrosinemia Pal to medical appointments. That way, all necessary information is in one place.

The Tyrosinemia Pal was developed through a grant from Rare Disease Therapeutics and is distributed to families of children with tyrosinemia.

Download the Tyrosinemia Pal below.

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Table of Contents and Introductory Material

Table of contents
Introductory letter
About tyrosinemia, type 1
Things to do
Advice from other parents who have children with tyrosinemia

Section 1: About Tyrosinemia

New parents' guide
The genetics of tyrosinemia, type 1
Your guide to tyrosinemia
Frequently asked questions about tyrosinemia
Managment guidelines
Tyrosinemia and the self-management timeline
Evaluating medical information: a guide to websites

Section 2: Medical Management

Medical management of tyrosinemia
Laboratory monitoring

Section 3: Dietary Management

Tools and equipment
Formula facts
Formula intake record sheets
How to keep a food record
Diet record sheets
Finger foods are fun
Finger food suggestions and recipes
Look-alike foods
Babysitter's guide to tyrosinemia

Section 4: Your Health Care Information

Tyrosinemia-related lab work/tests/procedures
Other lab work/tests/procedures
Health care provider information
Nitisinone enrollment form
Nitisinone order form
Appointment log
Insurance information
Medical expenses
Emergency contact information
Immunization record
Recommended childhood immunization schedule
Growth records and link to growth charts
Transitions - looking ahead
Transition timeline for tyrosinemia and introduction

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